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At genetic risk for ALS or FTD?
You are not alone!

End the Legacy is a community organization led by and for people and families affected by genetic risk for ALS and FTD. Together, we navigate uncertainty and work toward a future free of both diseases.

Connect

Meet others who understand.

Join community meetings, peer-support conversations, and online groups.

Find Community

Learn

Explore clear, accessible information about genetic risk, care, and opportunities to participate.

Explore Resources

Research

Explore studies and learn how ETL brings community priorities into research through participation and collaboration.

View Research

Partner with ETL

Are you a researcher, clinician, funder, community organization, or other potential collaborator? We welcome thoughtful partnerships that advance support, education, research, and advocacy for people and families affected by genetic ALS and FTD.

Email us at info@endthelegacy.org

What's Happening

Assessing ALS / FTD Claims Workshop

October 30, 2026 9-10AM

Learn with Amanda Nottke, PhD on how to assess claims through the lens of potential benefits and risks.

Sign Up

Speak With a Genetic Counselor

November 2 2026

Learn about what genetic testing is and the importance of genetic counseling from a Licensed Genetic Counselor

Sign Up Here

Refreshed Genetic Testing Resources

10/20/2026

Our Genetic Testing Info Pages have been updated

Learn More Here
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